Indiana Pouch - Interstitial Cystitis (ICN) Support Forum

Trishann · 05-27-2007, 10:47 AM

I was reading about a girl had a cystectomy, also urethra was taken out. She had a Indiana Pouch made for the bladder. She was doing great without no pain, pain free. Couple years later she has all the IC symptoms back in the pouch. Can anyone tell me if this is possible? I don't understand how this can be possible.

Take care, Trishann

***leelee88*** · 05-27-2007, 11:55 AM

Trishann,
I have heard the same thing that IC can come back.. So it makes me believe that its like endo, because you can remove endo or the organ its on but it can come back.. But its strange how IC just affects the bladder..You know its funny though because I was thinking IC causes alot of inflamation and so many of us who have IC also have IBS some might have it but have never been dg with it.. There are 2 kinds but both cause inflamed tissue just like in IC.. I wonder if there is any kind of connection. That might explain how it would come back if it was never really gone in the first place. Thats why it could attack the new bladder.. Its just a thought.. IC is such a strange mystery disease..

You IC friend
Ronda

Babs RN · 05-27-2007, 11:55 AM

Trishann,
I know when I saw Dr. Raz, it was made clear that a cystectomy would not keep the IC away. One of the theories is that because it might be autoimmune that you begin attacking the pouch. It is a chance you take, I guess. If they would just figure out what causes this rotten disease, maybe they prevent it from reoccuring.

Hugs,
Barb

***ICNDonna*** · 05-27-2007, 12:54 PM

Yes, it's possible.

Donna

Trishann · 05-27-2007, 01:08 PM

Because of this I can't help wondering if it is autoimmune disease. I found out I have arthritis in my hip because of a degenerate (something) and a spur. Now I am waiting for the blood test to come back and see how much inflammation is in my body. The thing is we all have IC, which is inflammation of the bladder, so why aren't we all have been check for this. I never heard of it before until my doctor suspect that I have arthritis. The test is ANA and ESR and RH blood test. What I am saying would not these test be high if you have IC too. Or am I confused and not understand all of this. It just seems alot of IC"ers has other inflammation in their body and that makes me wonder about if it is autoimmune disease but again maybe I am not understanding the medical terminology. I wonder if there has been more research to see if it is autoimmune disease.

Thank you and take care,
Trishann

***leelee88*** · 05-27-2007, 01:43 PM

I believe that to Trishann, I think they should concentrate on the fact that its a strong possibility that it is an autoimmune disease.

Trishann · 05-27-2007, 03:56 PM

Ronda I think that would be great too. So many times I thought about having this surgery done. To have a major surgery done like this and then to find out that you can still get the IC back in the new pouch is so devastated. Something is major wrong with this picture. When I read this story I was shock, I knew if you leave in the urethra that it could come back but that was taken out too. There is got to be something more going on with IC.

Take care, Trishann

Trishann · 05-27-2007, 04:02 PM

Barb thank you for the information. I wasn't for sure if this was possible but I know people here has been right on target. Thank you too Donna.

Take care, Trishann

**Judith56** · 05-27-2007, 04:46 PM

As Donna said, it is possible for it to happen, BUT in my experience of talking to many people over the years (22 yrs.) it is rare. If it was that common an occurence I doubt that the surgeons would be doing it as much as they do. My pouch is 16 years old, I do not have IC in it, but I do have IBS in my pouch. I got that diagnosis last August. It is not terrible and there are meds I can take to help it. I still would rather have this to deal with than my bladder that was destroyed by IC. Judith

DebbieD · 05-28-2007, 02:11 AM

I do no have the pouch! I have an Ileo-conduit and yes IC is there all the time. Belive me. I had my Bladder and all things attached out 22 years a go and 2004 I had a Kidney removed cause the IC attacks everything in its Path.I have a Great Dr. for 35 years and in My case he has never seen IC attack the Way it has done to me.

I hope that this helps.

Have a nice day
DebbieD

***leelee88*** · 05-28-2007, 02:46 AM

Wow Debbie.. Im so sorry, but thanks for the information..
So this is possible you know if it is auto immune it could just mean that some people are more susceptible to getting IC in other places, just like any other disease you know if your immune system has been weaken or you just have a weak immune system..Research really needs to be done on this...

Ronda

Trishann · 05-28-2007, 04:50 AM

Debbie I am so sorry the surgery did not work as well for you. Thank you for being honest and for telling us your story, it really takes courage to do that.

Judith, that rare thing you are talking about is what bothers me. In mine life time, I was the rare one. I do understand what you are talking about being happy of having the terrible bladder taken out. It sounds like your life has been better since, not without complications, but complications that was able to be fix or helped. I hope you continue to do well. Judith I hope you aren't offend when I ask questions or when I hear things and I want to know the truth. You all have been so honest and truthful that I trust your opinions.

Lesa I am glad you are doing well.

Ronda, I am so much of a believe that this is more then what people thinks. I was reading on the internet about people's lining of their heart, liver, lungs, and things like that is mess up. So why is it different because it is in the bladder. I know I need to do more research on this to understand but it just seems strange. What's up with the lining of organs are being attack.

Take care, Trishann

**Judith56** · 05-28-2007, 07:52 AM

Trishann, I am not in the least offended when you ask questions! I believe one should ALWAYS ask questions, that is the way we learn things. I am also one of those people who if it is rare or a bizarre complication I am the one it happens to. Everyone needs to decide what they think will be best for them. I personally am willing to risk things even if there is a chance that there will be later consequences, but that is just me.

As for IC affecting other organs, my uro who I have been seeing for 28 years, once told me that it can affect other organs. I agree that much more research needs to be done!

Trishann · 05-28-2007, 08:35 AM

Judith,

Thank you so much, it means so much to me to be able to speak what is concerning me. You definitely have been an angel to me and have been so helpful with all the questions that I have been asking.

You said you have an personality that is willing to take risk, oh my goodness, I am such the opposite. I need every I dotted and every t cross before I make a decision. That is not good sometimes at all. My husband is a lot like you, and I do see good things that comes because of it.

Thank you so much again Judith,
Take care, Trishann

**Judith56** · 05-28-2007, 09:34 AM

Glad I can be of some help. I do not take risks with everything, but I tend to do more so when it comes to health stuff if I am truly miserable. I figure if I have a chance for improvement then it is worth a try. I would never however try something that has never been done before if I know that this is the case. I dont like being a guinea pig